Georgie’s Journey

What a weekend we had. The Wolfson Children’s Challenge was the absolute most fun day ever. We were humbled by the amount of love that showed up for George. We had a total of 150 plus show up in their shirts for the event and then another 30 plus who couldn’t be there but wore their shirts in honor of him that day. Everywhere you looked at the event you could spot someone in their Georgie’s Joggers light blue tee. It was something else. The official Georgie’s Joggers relay team for the 55k came in 28th out of 123 teams. Almost the entire 1 mile fun run was made up of Georgie’s Joggers. But the most incredible feat of the day was from my good friend Katie Fackler who not only ran the entire 55k by herself but won the entire race. Amazing!!! The whole day was filled with so much love and joy. I am already looking forward to next years event. Thank you to all who honored George that day. This morning we went in for labs and a dr check up. His counts were all great. Hemoglobin was 12.8. Pl

Yesterday George had his last round of the new chemo. Hip hip hooray!!! Praying that this will have finally done the trick of getting rid of the hemolytic anemia. We will know for sure in a few weeks. He also received another treatment of a super strong IV antibiotic that he gets once a month to prevent him from getting pneumonia. Ever since his blood transfusion on Tuesday his face has been extremely red. The steroids make George have puffy cheeks and a red face but this red was startling. Like something was wrong. He also fell asleep at his treatment. This may not seem strange to anyone because little kids nap but for George this was very strange. He fights a nap like it was going to be something that caused him pain. He hates napping. He takes an afternoon nap and it’s not everyday. My schedule is so busy with everything that we hardly ever are home to put him down for one. When I am home it’s like taming a wild animal to try and make him go to sleep. So for him to fall asleep at 1

We woke up this morning, bundled up and headed into Nemours for labs and a dr appointment. Upon arrival we were told that he would be getting his blood transfusion. We were not prepared. When we know there is going to be a day stay we pack accordingly with snacks and toys and computers. Fortunately for us, Nemours is always full of fun and entertainment. We did not leave the hospital until 5:45 so it was a very long day. We painted, danced, built with magnetic tiles, played eye spy (downtown skyline version), snacked, watched 2 movies, visited with a Jacksonville IceMan Hockey player and snacked some more. With all of the fun and distractions it was still a long day for a 2 year old to be confined in a small room while attached to a pole. We packed up with all of the staff at closing time and made our way down to the car. As the doors of the elevator opened George spotted Sprinkles the Clown. She was packing up her things too and was ready to head home. She heard the squeal of delight

The temperature isn’t the only thing to have dropped this morning. George’s counts dropped again. His hemoglobin is at 7 now. They ordered his blood and it will be here Wednesday. He received another round of chemo today and seemed to handle it ok. He is extremely pale. They told me to watch out for him to become very sleepy or low in energy or just acting off. Well, this is tricky because the chemo makes him feel this way too so I don’t know whether it is from that or from the really low hemoglobin. We are just going to keep a close eye on him today and he goes back in the morning for more labs and dr appointment. While we were at the hospital a fellow pediatric oncology patient who we have gotten to know the past year happened to be in the next room as us while she received a treatment as well. Her mom gave George the most precious little gift. It was a Toy Story themed activity box. This very talented mother in Texas makes these precious little activity boxes for any theme you would

Friday George went in for labs and since it was also a school holiday, Kate was able to join us. She picked the right day to be there too. His sweet nurse brought the kids chick fil a breakfast minis. Once again, treating our family like we were their own. George also picked out a valentines art project to paint in the toy bin. Nemours always has art with a heart in the waiting room for the children but George never gets to go in there because of isolation so this was a real treat for him to do while he waited in his room. Although he gets to paint and do art when he is at Wolfson, he never gets to go out to the waiting room at Nemours with his sisters and he always wants to. They drew his labs and sent us away with the unknown plan of a blood transfusion for the weekend. They wanted to wait to see what the days labs brought. Well, turns out they weren’t good labs at all. Everything dropped. Everything. Hemoglobin, platelets, ANC, you name it. It all dropped. I gave him another Neupege

George checked into the day hospital today for round 2 of his new chemo treatment. He was also suppose to have a blood transfusion today but they decided to hold off instead because his hemoglobin had come up to 8.7 from 8.2. They thought maybe it was coming up on its own. It turns out that it didn’t come up on its own. It was back down to 8.1 and so we will go back in tomorrow morning and get run labs again to determine if we need to check into the hospital for a transfusion on Saturday or Sunday. A lot of back and forth on the decision making because his counts are all over the place, always. George was visited by his buddy Christine who is the child life specialist on his floor at Wolfson. She is good friends with the child life specialist Taylor who works in the day hospital so whenever George comes in she calls up to the 4th floor and Christine comes down to play. Today’s toy was the coolest. It was these magnetic tiles. George and his buddies built everything you could think of.

This morning we checked into the day hospital to start George’s new round of chemo. He had a fever yesterday and his cough has picked up a little so I wondered how this would effect it all. We went in prepared for a blood transfusion as well but they decided to hold off on that until Thursday. The treatment seemed to go alright. Time passed pretty quickly because of his constant entertainers who come by. Today was another Art with Heart painting class where, no shock here, he chose a tank to paint. He walked into the hospital dressed in his Spiderman alter ego and left dressed as his Darth Vader alter ego thanks to his sweet nurse Taylor who always makes sure George has some fun gifts for him to leave with. The force is strong with this one. Of all the super heros and characters that he likes to dress up as, Darth Vader really pulls out his inner thespian. When I say he goes full character I mean he goes full character. His posture is tall. His walk is stiff and his voice turns deep. I

The whole insurance saga began in November with them denying George coverage on this particular type of chemo that was to help attack and destroy his hemolytic anemia. After a few failed appeals and a few other failed attempts medicine wise to heal his condition brought on by his transplant, the drs were in an urgent state. George does need this medicine. He can not continue to get blood transfusions constantly. Hours were spent by drs and nurses researching articles from other drs around the world proving that this medicine is the answer. Hours were spent by drs and nurses on phone calls with the insurance company pleading his case. Hours were put into letters composed by his transplant team explaining his need for this. All to no avail. They still denied it. This morning after another hour of getting nowhere with them on the phone his nurse called to say that they were going to have to get a conference call together to once again appeal the denial. All along God had a plan. A few day

Today George had his dr appointment at 3pm instead of in the morning. This was a first for us and it was kind of nice. I originally thought it would be a pain to go in at the time of the day when we all seem to be tired. This was not the case. Not having to wake up and rush in worked out wonderfully. We had a nice day together and then slowly made our way into Nemours. No labs were drawn today. It was just a check up and meeting to discuss the game plan for his next blood transfusion. His hemoglobin actually came back at 9 yesterday instead of 10 like we thought. I am going to take him back on Friday to recheck and see if the blood transfusion will be on Saturday at Wolfson or on Monday at Nemours. The insurance company is still resisting our appeals to cover the cost of the next round of chemo to fix this anemia. We are appealing again and have enlisted help from a friend who has some pull at Florida Blue. It’s so strange to me that insurance companies can deny a drug to a patient tha

Last night at around 10pm Bowers began throwing up. It continued the entire night. This morning she seemed to be feeling better and it looked as if the throwing up had subsided. We took Kate to school and George to the drs for labs and a check up. A quick spot check on his hemoglobin came back at 10. This is slightly lower then Friday’s check. I haven’t gotten the results back from all his other counts yet but will know more at tomorrow’s appointment. The insurance company is still playing hardball with his medicine for his next chemo treatment but the dr will get it approved and he will begin that next week. We left Nemours and ran to get Kate from school. We came back up to Nemours to pick up some new prescriptions for George. The minute we stepped out of the car, Kate began throwing up. Apparently she ate a huge breakfast and dinner because it was a lot of throw up. I apologize to the janitorial staff who will have to clean up that awful scene. I felt terrible but there was nothing

This year will be the year of New George. Last year was focused on getting him to and through transplant. This year we will be focusing on his wonderful new life. There were so many things that George missed out on last year as far as typical 2 year olds experience. In a few months he will hopefully be able to start living life as a healthy little boy. He will be potty trained. He will learn to swim. He will get to go to the park playground. He will get to go to birthday parties. He will get to travel. He will even get to start school at the end of summer. Lots and lots a big firsts for George. Best of all, he will not be dependent on medicine to keep him healthy and alive. Huge, huge praise.  I think I will always be more cautious with George then I was with my girls but he should be able to live a healthy and normal life very soon. What a mind blowing reality to think about. What an exciting life he will live. It’s getting very close to the victory line and we are all so giddy thinki